Thursday 2.10.11
After seeing our hemophilia nurses...we were sent across the street to have a flouro dye study to check for a clot at the tip of Blake's PICC line. One thing I really like about Children's is they let parents be a part of the care...so both Rustin and I got to entertain Blake during his test. Blake laid on the table with this big hood-thing over top to take live xrays, I held his right arm still, while Rustin held the iphone with Baby Einstein playing. Blake was so good and laid very still.
One of the PICC line nurses was there for our test, so we got to pick her brain about Blake's line. We told her how it had come out a bit during dressing changes and about the swelling and collateral vessels seen above the PICC around Blake's shoulder. She told us his PICC being out and not in the SVC very likely could have contributed to the problems we were now seeing. UGH!
No clot was seen during the study, so we were sent back across the street to see our nurses again. On our walk back we strolled by the PICU...memories...
One of the PICC line nurses was there for our test, so we got to pick her brain about Blake's line. We told her how it had come out a bit during dressing changes and about the swelling and collateral vessels seen above the PICC around Blake's shoulder. She told us his PICC being out and not in the SVC very likely could have contributed to the problems we were now seeing. UGH!
No clot was seen during the study, so we were sent back across the street to see our nurses again. On our walk back we strolled by the PICU...memories...
Back at the hemophilia clinic they told us to head back to radiology for an ultrasound. We checked in and waited FOREVER. Luckily Blake kept himself entertained by watching other kids waiting and with this toy...
Look at how brave he's getting...standing up like a big boy.
Finally...they called our name and we were back getting an ultrasound of Blake's arm, neck, and chest. During the ultrasound Nurse D came and told us Dr. M wanted to admit Blake...we were a little confused as to an exact reason, but happy they were being so cautious.
Admitted to room 5330.
Because no clot was actually visualized, tPA (a clot buster med) was decided against. So the plan was for Blake to go to surgery Friday morning, have the PICC removed and a Broviac line inserted. The rest of Thursday we spent circling the halls of the fifth floor pulling Blake in the wagon, which he loved!
In preop we met both the surgeon, Dr. S and anesthesiologist, Dr. C. They explained the procedure and the plan of action to us. Dr. S explained he was going to insert Blake's new central line through his right jugular vein, threading it down to his heart with the other end extending out from his right chest. He went on to explain that Broviac lines usually only last 6 months to one year, and after that would could re-discuss a portacath placement. YAY!
Then Dr. C gave Blake some Versed and he was taken to the OR in the arms of the nurse. It's so weird watching your kid snuggle a complete stranger.
About an hour and a half later, we got a phone call from the PACU saying Blake was done and we could come see him! When we got to his side...he was still asleep with his little oxygen mask on, he looked so sweet. After a little while he woke up and we got to snuggle him! Dr. S came by and said everything went perfect with both the PICC and the Broviac lines.
Dr. M and her residents rounded soon after we got to our room and we discussed different options and treatment plans with Blake's swollen right arm. Bottom line was the PICC had to come out. Which next led us to discuss alternative IV access options in order to give Blake his factor 8 every morning. Rustin and I jumped all over this, we really wanted a porta-cath for Blake, especially for the upcoming summer so he could swim! However, like we were told in November, Blake was still too small for a port. Darn it! So our next option was a Broviac Line, which is a central intravenous access line but instead of being under the skin, like the porta-cath, the end of the catheter is outside the body. Here's the difference in photos...first one is a porta-cath, second is a Broviac...
Because no clot was actually visualized, tPA (a clot buster med) was decided against. So the plan was for Blake to go to surgery Friday morning, have the PICC removed and a Broviac line inserted. The rest of Thursday we spent circling the halls of the fifth floor pulling Blake in the wagon, which he loved!
Cutest hospital patient ever! Don't let his face fool ya,
he was having a blast.
he was having a blast.
Friday 2.11.11
Blake was NPO (fasting) since midnight for his surgery schedule for sometime this morning. Blake was an 'add-on' to the surgery schedule so we had no idea when he'd go down. We spent the morning playing in our room and waiting for OR to call.
At 9am the OR nurse came to pick us up. We waited outside the preop room for our turn. Blake and Rustin kept each other entertained running up and down the hall.
In preop we met both the surgeon, Dr. S and anesthesiologist, Dr. C. They explained the procedure and the plan of action to us. Dr. S explained he was going to insert Blake's new central line through his right jugular vein, threading it down to his heart with the other end extending out from his right chest. He went on to explain that Broviac lines usually only last 6 months to one year, and after that would could re-discuss a portacath placement. YAY!
Then Dr. C gave Blake some Versed and he was taken to the OR in the arms of the nurse. It's so weird watching your kid snuggle a complete stranger.
About an hour and a half later, we got a phone call from the PACU saying Blake was done and we could come see him! When we got to his side...he was still asleep with his little oxygen mask on, he looked so sweet. After a little while he woke up and we got to snuggle him! Dr. S came by and said everything went perfect with both the PICC and the Broviac lines.
Back in our room...we kept a grumpy/tired Blake busy with the wagon and played in the crib. Post-surgery, Blake was getting factor every six hours...this meant we didn't get much sleep. And many of these factor doses included pre and post factor levels, which meant blood draws. Thank goodness for a central line that facilitated this!
Saturday 2.12.11
Today Dr. M wanted a CT of Blake's his right arm to check circulation and to look for a blood clot, since removing the PICC didn't show any improvement of the swelling. So at 7:30 this morning the medical resident told us to keep Blake NPO (fasting) for the scan, he last nursed at 3am and had food at 7pm the night before.
Down the hall from our room was the hospital's play room...but of course it was closed on the weekends. We knew our morning might be a challenge with a hungry Blake...so Rustin found a security guard to open the playroom so we could get a walker toy. Blake was in heaven walking the halls of the fifth floor while I freaked about all the disgustingness he was touching!
These two kids kept Blake entertained for a couple hours while he was starving waiting for his CT.
Today Dr. M wanted a CT of Blake's his right arm to check circulation and to look for a blood clot, since removing the PICC didn't show any improvement of the swelling. So at 7:30 this morning the medical resident told us to keep Blake NPO (fasting) for the scan, he last nursed at 3am and had food at 7pm the night before.
Down the hall from our room was the hospital's play room...but of course it was closed on the weekends. We knew our morning might be a challenge with a hungry Blake...so Rustin found a security guard to open the playroom so we could get a walker toy. Blake was in heaven walking the halls of the fifth floor while I freaked about all the disgustingness he was touching!
These two kids kept Blake entertained for a couple hours while he was starving waiting for his CT.
By 1pm we were getting a little annoyed that Blake still had not gone down to radiology. Our nurse had called multiple times and radiology had an excuse each time. So we continued to wait and Blake got more and more hungry and more and more grumpy!
By 2pm Blake was hysterical. Nothing we did comforted him. He was HUNGRY! How do you tell a 10 month old 'to hang in there.' UGH! We spent a lot of the afternoon in the family lounge/kitchen room trying to not drive everyone crazy, but seriously...we're talking 12+ hours NPO!
Around 4pm our nurse sent us down to radiology...YAY! But when we got there, there was no anesthesiologist to sedate Blake. The rad tech asked us to lay Blake on the scanner to see if he'd lay still. Uhhhhhh...are you kinding me! Of course he's not going to lay still! Ugh...Rustin and I were so frustrated! The rad tech sent us back upstairs and told the resident Blake would need some Benadryl or something to keep him calm during the scan. (WHAT?!) Our nurse was livid...she called radiology and asked where anesthesia was and was told they had left hours ago! Seriously?! SERIOUSLY! They make my baby starve for hours and then don't even have the clue to call us and say the scan couldn't be done today! Oh man! We were furious.
The hematology attending, Dr. H, came by apologizing and explained there was massive miscommunication on both ends. But most importantly, Blake could eat and we were being discharged! The CT could be done as out-patient. YAY!
I don't think Blake ever nursed so good - he was probably worried he wouldn't get anything for another 19+ hours! The whole day he probably felt so tortured because I, his source of food, was right there but wouldn't feed him. As he nursed I asked for him to forgive me (I think he did.)
So, we left the hospital with real no answer as to why Blake's right arm and hand were swollen and what was causing the superficial collateral blood vessels above the PICC site. We hope the CT can give us some answers!
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